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During the semester, I wrote along with you. I had an assignment of my own, a proposal for my dissertation, that was due at the end of the semester, and required the same basic structure as the combined assignments for this course.
Assignment: A dissertation prospectus (proposal), with a long bibliography of potential sources for the entire dissertation.
Audience: A board of reviewers, high-ranked faculty members at the Graduate Center, CUNY. The language is very “academic,” because it must showcase my own style for a high-brow scholarly community, and demonstrate my overall goals for my dissertation (the dissertation is a scholar’s first book).
Results: If this is passed, I advance to “candidacy.” I am no longer a Ph.D. Student, but a “Ph.D. Candidate,” qualifying me, basically, for a promotion. I also earn a master’s degree in philosophy (M.Phil.) by becoming a candidate (my third master’s).
Body Cost: Healthcare and the Knowledge Economy
Dissertation Prospectus | Seth Graves | Dissertation Director: Carmen Kynard
These highways—or, more accurately, networks of distributed intelligence—will allow us to share information, to connect, and to communicate as a global community. From these connections we will derive robust and sustainable economic progress, strong democracies, better solutions to global and local environmental challenges, improved health care, and—ultimately—a greater sense of shared stewardship of our small planet. —Al Gore, 1994
Scholars of literacy have moved away from a static, universal conception of literacy, what Brian Street has called its “autonomous model,” towards situated, “ideological” models defined by one’s relationships to discourse communities—literacy located in intersectionally lived experience. In accordance with this position, I’ve aimed to engage the issue of healthcare in a digital age from a position of situated literacy. My proposal employes a structural trajectory familiar to many composition and rhetoric scholars: It opens with a personal literacy narrative as to originate its concerns, then intervenes rhetorically, and culminates in researched argument. This process, as writing itself, is recursive, and will reproduce itself within chapters of the dissertation.
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Summer 2017: From one of two-dozen beds in the emergency ward of New York City’s Weill Cornell Hospital, I watched pundits speculate whether the Republican-controlled Senate would successfully reach its long-desired goal to kill the Affordable Care Act and replace it with the American Health Care Act, which had made it through the House early that May. Though Republicans had sworn to protect patients with preexisting conditions like myself, they condoned permitting insurance companies to raise costs on hypermedicalized bodies.
I’d passed out from internal blood loss due to a raging recurrence of a lifelong autoimmune disease, XYZ. XYZ is an uncomfortable disease to have, and abject discourse to conduct. At unpredictable moments, it escapes dormancy to [REDACTED]. Without the experience of another body, it’s hard to tell you how much it hurts. I keep a ruler in my bag to bite down on. I routinely vomit from the pain. During long periods of remission, it’s easy to forget what that pain felt like, or how long it lasted; these cycles make each recurrence feel anew. Sometimes, it progresses. I now have its fullest, most difficult iteration.
Too much inflammation can be fatal. Patients like me gradually scale up immunosuppressant medication, each adding side effects. One caused mania. One caused severe weight gain. Once caused osteoporosis. I began the next and effectively final option for medical treatment before surgical removal [OF AN ORGAN]—an intravenous infusion most commonly used to treat severe cases of rheumatoid arthritis, [MED]. I’m lucky: Insurance companies, if they accept it at all, require a lengthy and test-filled application process for [MED]. Many lose their chance in wait. It costs $3,000 per dose. My struggle to keep my organs in tact is expensive and unwanted. After my first infusion—subsequently administered every eight weeks—I felt back. I ate a solid meal. I started post-traumatic therapy. I’d lost 25% of my body weight.
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I use the internet as a way to toggle the everyday life of a chronic illness. I’m not satisfied by spaces like WebMD, which concentrates on replicating a doctor’s fact-finding procedures in generating a diagnosis. As someone who knows what I have and wants it to hurt less, I’m more concerned with finding stories about the experience of having an ongoing condition. I read the stories of how people react to rare drug treatments; I feel more prepared for their mental and physical effects when I read them in stories of living with them. I read stories of how people have lived with reconstructive surgery. I read stories of hikers and mountain-climbers, travelers and expats. I read a blog by a woman who shares that the low roar of pain she feels every day makes her talkative. She says she can feel it—pain like loud white noise. That she’s glad she can read the comments, which tell her it’s okay. I can feel it, too.
What these stories provide is multifold: on one level, they are miniature amateur experiments with actionable results; on another, they are empathetic assurances of coexistence, somatic passages of emotional validation. These medical stories speak to a disease that manifests itself as a constant dialogue between emotional and physical states, each triggering the other. This information network offers the collectively shared experience of my one disease and improves my life.
To me, this feels like what the internet is for. And in the early to mid nineties, this was often how it was advertised—as a communicative forum that brought people together, for global/local sites of experience exchange—even if the messages were variously distorted for material gains. Indeed connectivity has been the longstanding rhetorical draw of internet use. I am interested in the emotional gravitas of this sale. Sara Ahmed has described how “emotions work as a form of capital: [that] affect does not reside positively in the sign or commodity, but is produced only as an effect of its circulation” (120). I argue that the the metaphor of “connectivity” facilitated an affective sale of internet access, a sensation of mutual, benevolent coexistence—a sensation described once in rave culture as pronoia, paranoia’s benevolent inverse.
But this way of using the internet has little legal protection. The spaces of “making” have become increasingly obfuscated or siloed. More and more, internet usages have become dissociated from open World Wide Web browser platforms, relegated to “Apps” and selective content. Internationally, data platforms for cell phones (in developing countries, by far the most widely utilized online-access devices) have increasingly restricted access to browsers and global internet access, limiting users to a handful of app portals from which one cannot venture outward. Google has opted to comply with China and construct a restricted Chinese version of its own search platform, undermining the free access ideologies of internet neutrality. I will describe the power of the internet medium (and its wealthiest stakeholders, whom I will define as internet literacy sponsors) to manage citizen behavior—to borrow language from Rebecca Dingo, to “colonize the future” (Dingo et. al.)—and to create specific intended subjects as actors within a neoliberal global society, under the affective umbrella of pronoia.
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Meanwhile, a new cultural war and the rise of western demagoguery factionalize citizens and threaten the practice of empathy that drives social systems like healthcare. Obama’s campaign for president in 2008 successfully utilized web 2.0 platforms to appeal to voters; since then, political discourse has lived in and attuned to digital mediums. And the election of Donald Trump, who eschewed traditional media campaign strategies for Twitter virality, further demands that scholars interrogate how our evolving, complex interrelationships to digital literacy have affected our ways of thinking about governmentality. My American president and some members of his party openly attack the free press, the very heart and legacy of networked storytelling in a democracy. They have ridiculed the disabled, rejected Obamacare and imbued it with a racist ad hominem attack on Obama as its sponsor, and disrupted Americans’ access to environmental and health data—as well as its access to insurance enrollment. President Trump has openly claimed an eugenic disposition. He propagates a paranoid “deep state” theory of a global conspiracy to minoritize whites.
When sociologist Arlie Russell Hochschild explored this felt narrative of Trump-conservative politics, she found a pervasive sentiment that the Democrats were trying let historically marginalized groups—including the sick—cut in the long line to the American Dream. The authoritarian tone of this right-wing contingent amounts to a recent iteration of an ongoing American tendency towards “negative rights,” what the Frankfurt school’s Erich Fromm coined “freedom from”—freedom from overregulation, freedom from government restriction, freedom from paying your neighbor’s medical bills. On both international and domestic fronts, it seems that the true affective circulation is often the inverse of what’s advertised: distrust, misinformation—paranoia. It’s the existence of both affects that generates the energy of demagoguery: the in-group that wants to improve your life, the out-group that wants to hurt you.
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In Illness as Metaphor, Susan Sontag covers the myriad abuses brought upon the diseased by way of the social metaphors affixed upon their condition—metaphors that reflect both their ages: TB and its co-associative fey, romantic death; cancer and its void of abjection; AIDS and its manic stranger-danger. In tracing the damages and social formations of these metaphors, she maintains: “My point is that illness is not a metaphor, and that the most truthful way of regarding illness—and the healthiest way of being ill—is one most purified of, most resistant to, metaphoric thinking” (3). I share Sontag’s rage over the menacing idiomatic social usages of these diseases as metaphor, yet I have also derived comfort in considering the ways of seeing, the heuristic-making, that emanate from my own chronic illness, an autoimmune disease. In her formulation, these metaphors are social impositions upon the inflicted. But what of the inflicted’s own vista? In spite of the warning, I intend to do some metaphoric thinking.
Sontag confronts externally constructed, inscribing metaphors; in contrast, I’d like to consider immanent somatic/ontological ways of being for people with autoimmune diseases—conditions that concretely reject dualism. As Donna Haraway writes, “It matters which stories tell stories, which concepts think concepts.” There is knowledge-making value to the ill-as-storyteller. I find a key homological connection to the creation of the “Stack”—a useful shorthand concept for how internet infrastructures develop symbiotic relationships to nation-state infrastructures: they disrupt them, and demand their presence. And so do autoimmune disorders, which are genetic but activated in the body by experiences of physical and emotional trauma.
The word “condition” lives inside “human condition”—our discursive moniker for that which the humanities confronts. Conditions shape bodies. They disrupt or subordinate bodily capacities. It is in this question of human value that Giorgio Agamben, beginning with his 1995 work Homo Sacer: Sovereign Power and Bare Life (trans. 1998), has considered, interrogating the spaces in which sovereign powers actively or passively inscribe rights to bodily destruction, and therein bear markings upon bodily value. What vocabulary do we have for swerve at the time of conception—one that extends itself beyond the reductive pitfalls of hyper-darwinism? What justification do we have to give birth to that which fails genetic standards, without robbing the agency of the birther? Such occupation with the fittest lives, I will argue, lives deep within the heart of this digital, libertarian chapter of American and global histories. Its legacy was visible during the inception, debate, passing, and subsequent vindications of Obamacare. The American right hosted a monumental criticism of the American left’s capacity to champion digital literacy, ultimately dismissing that a black man in the White House could lead an online initiative to universalize the provision of healthcare to Americans. The Affordable Care Act reconstituted the internet as a primary site of healthcare acquisition in the United States and placed a massive social welfare project online—a governmental entry into the internet economy, and a challenge to the internet’s anarcho-libertarian roots.
The internet is a massive apparatus of globally interconnected materials that users entangle their lives with, coexist with. America bought the Internet for the way it made Americans feel. Now that affective economy shares space with a physical one, an online marketplace where one goes to feel better. N. Katherine Hayles, Karen Barad, Donna Haraway, and other New Materialist scholars have called us to consider the ways in which we are already posthuman, living out interrelationships to the agential, sometimes cyborgian, matter of non-human within us. As we consider the future fabrics of our human-cyborg lives, Haraway calls us to attune to new ecologies, to be-with—to think co-conditionally. Meanwhile, the work of Sylvia Wynter, Hortense Spillers, and Alexander Weheliye challenge New Materialist thinking not to diminish the role of racialization in the conception of human and a history of white Western authority over biopolitical power. This disenfranchisement of non-white bodies, combined with an ideology of negative rights, spurned a racist, anti-governmental response to a century of proposals for healthcare expansion.
Such critiques have not ceased, but instead, as did healthcare, jumped online.
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Chapter Summaries
Chapter one, “How the Web Was Spun,” will trace the convergence of interest in the World Wide Web as a public-facing medium in the early nineties and its rhetorical-ideological insertion into a redefined economy. After a swift move to integrate a public network using the Department of Defense’s networked system, built with telephone lines, successful cross-media interest campaigns for a public, networked site of information sharing and market activity assured its subscription. Since the mid-nineties the term “knowledge economy” has defined a new, digitally injected labor force. Software hides processes and displays products, arranging a two-tiered economic power structure between makers and users. Labor mobility, then, becomes process-oriented in the digital economy. Following Evan Watkin’s Literacy Work in the Reign of Human Capital, I consider a reconstituted economic system that prioritizes just-in-time human capital, and subsequently the acquisition of just-in-time labor literacies. The result is a precarious body.
My second chapter, “Preexistence,” will consider the politics of passing and implementing government healthcare leading up to Obamacare, focusing on two aspects: the rhetoric surrounding preexisting conditions, and the sentiment expressed by both political parties that the other was advocating for social darwinism. Drawing upon historical-rhetorical intervention methods (Roberts-Miller, Wan), I present the rhetorical evolution of arguments both for and against healthcare expansion, as to trace an origin to today’s debate—paying particular attention to ties between healthcare and innovation. Prior to the rise of Nazisim, eugenic attitudes played significant roles in American healthcare. And for decades, the American Medical Association’s policy was officially against universal healthcare. Presidents Teddy and Franklin Roosevelt, Truman, Johnson, Nixon, Ford, Carter, and Clinton all offered variations of universal healthcare or medicare-for-all bills that were ultimately defeated. Obama, like Clinton, abandoned more socialized appeals for a neoliberal, profit-saving and market-based healthcare system. Factors related to the knowledge economy model, driven by the new medium of the internet, contributed to the salience of this final and most politically successful approach.
The third chapter, “Pronoia I,” will present user networks of health stories and articulate their discursive spaces, user networks, and rhetorical conventions. I will discuss my own experience as a participant and user of forums, blogs, and advocacy sites operated by named or anonymous users, all meant to represent experiential versions of health states. The desire to feel better instigates raw desires for experiential knowledge, and the internet delivers. I’ve used such sites to understand drug side-effects and reactions, investigate or corroborate felt symptoms and grounded anxieties, and read about the future of my body when one of my primary organs is removed. These networks attest to both the affective reality of online user-commonses, and to an undercommons of chronically ill and underrepresented persons.
Chapter four, “Ad Obaminem” will present rhetorics of the cases made for and against Obamacare. The Tea Party critiqued Obamacare as a vengeful flexing of biopower by a socialist administration—adding to the precarity narrative developing of an anti-American, conspiratorial president (Spillers). Many focused on the so-called “lie of the year” (2010), in which Obama suggested that Americans could keep their health insurance if they already had it and liked it. And the nationwide techno-crisis of Healthcare.gov’s poor marketplace launch in 2013 foddered complaints about government ineptitude. Conservatives efforted to diminish Obama’s ethos, as the first presidential candidate to successfully wage a social media-based political campaign, to render him an unreliable broker of healthcare and digital literacies. As an apex to several decades of debate over the value of the welfare state, and oft-racist characterizations of whose life the taxpayer “subsidizes,” the Obamacare debate makes raw the growing fragility of the nation-state both as imagined community and governmentalized body. Internet demagoguery has eroded social norms and provided new platforms for eugenic discrimination. The Other fills the conservative narrative of the undeserving beneficiary.
Chapter five, “Pronoia II,” will readdress the proliferation of the internet in a global context, including policies regarding said distribution, and the bodily implications of present and future international networks. The chapter will focus on physical and health-related arguments and draw upon the methodological work of public policy rhetoricians (e.g. Rice, Dingo). Tech companies are now turning to developing markets for new customers. Their PR campaigns use of “knowledge economy integration” as (neocolonial) moral impetus for internet use. I critique the narratives that enter this content—ones in strife with defenses for internet neutrality and organizations’ own claims that the internet is a basic human right.
In an afterword, I will conclude with pedagogical implications for multiliteracy education, arguing for writing classrooms that engage students in literacy practices that Eve Sedgwick has called “reparative,” including embodied and inductive modes of compositional thought. Composition and rhetoric has consistently touted the mantra of teaching processes over product. I’ll reassert the value of writing and rhetorical pedagogy in a period of economic transition towards a process-hiding digital economy. The infiltration of networked infrastructures, rooted in optimizing rhetorics, on citizen habitus has seriously negative consequences for the value of the human body (the intersectional and cyborian body, in response to Jasbir Puar)—but technophobia attenuates this concern as though the problem were viral instead of lived-with. Instead I argue for the power of immanent narratives in discussing the chronic rise of cyborgian symbioses—drawing upon an interpretation of Donna Haraway’s concept of being-with.
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